Part 8: My battle with thyroid disease – waiting for total thyroidectomy.

For some time, I wrote about my battle with postpartum thyroiditis and thyroid disease following the birth of my daughter in 2017. I shared how I was ignored and dismissed whilst experiencing debilitating symptoms and how I searched relentlessly for help. A couple of years ago, I stopped writing. This is because I found support, and, as I wrote in a previous blog post, it was time to heal, to stop fighting and invest all that energy in ‘getting better.’

Life continued to be extremely challenging, but with the support of a consultant and his team, far less isolating and finite – there was hope.

I am currently navigating life post-total thyroidectomy and continue to find myself in unsure and uneasy circumstances, dealing with challenges that simply aren’t documented. I am going to look back, fill the gaps, and bring my story to date because, after all, it was sharing this story that led me to the help that I so desperately needed.

I remember waiting

The decision had been made that my quality of life would be improved with the surgical removal of my thyroid. I did not take this decision lightly, and I made it in partnership with a compassionate and expert consultant and his team. I remember waiting, I remember putting my life on hold, and as we emerged from coronovirus, being left behind once again. I remember being full of fear of catching long covid, I knew all too well the chronic illness battle and could not handle another one.

I remember changing my GP surgery

And I wondered why I had not done this sooner, the realisation of what we had been needlessly put through was stark. This new GP arranged tests for reassurance’s sake, followed the consultant’s letter and spoke to me kindly and respectfully. Receptionists were understanding, supportive and willing – the difference, such a small change made to me and my families life was huge.

I remember my partner being sick

This began earlier, but he remained sick for a couple of years – even now, it sometimes rears its ugly head. He contracted glandular fever, and I remember him being off work for months with illness and chronic fatigue. We were both down and had a toddler to care for in a pandemic. At the beginning, I remember making the decision to isolate as a unit with my folks, who lived down the road and feeling like we were doing something terrible, feeling watched and judged and wrong. I remember knowing we couldn’t do it alone, and I remember friends remarking, ‘I wish I had my mum and dad to help with childcare right now.’ All I wished was that my partner and I were able to look after our own child, without needing to be looked after ourselves. We muddled through until the wait for surgery began. I remember thinking how awful it was when he told me he felt ill, how sad I felt for him, and how much I wished I could make him better. I remember thinking, ‘this is how he feels watching me.’

I remember changing my telephone number

And self-preserving relentlessly. I remember working through layers of social norms and self imposed expectations as I learned to navigate life with an invisible disability. I remember, with certain people, feeling the pressure to ‘pretend’ to be unwell or talk about it endlessly on ‘good’ days in order to be taken seriously. I remember spending whole weekends with people who I was close with, who wouldn’t mention IT or check in – I carried the elephant and utter discomfort alone with a smile on my face. I remember video calls, which were the same. I remember needing emotional support from friends but didn’t have the capacity to update them, so I wrote this blog – it was easy to send on. Friends would respond instantly, saying ‘sounds hard,’ evidently not having had the time to read the first sentence. I was sent notes asking how work was (I didn’t have steady employment), whether I had holidays booked, or any exciting news, from people who I thought knew how hard life was and continued to be. Every single day, I woke up unwell, and I employed all my energy and self-care strategies to stay on top – to keep myself alive. I would try and fill my cup to have it emptied immediately with whatsapp messages that had no thought or care for the receiver. People just living their lives; I kind of understood, but I also (after a long time) quite suddenly allowed myself to expect more from friendships and relationships. To stop analysing and beating myself up for my responses when I felt uncomfortable, distressed or sad and instead accept, that if I felt a certain way, it was vallied and that I needed to preserve my energy to keep going. I remember having some deeply dark days and hours. Some days, I thought that I couldn’t survive. I didn’t have and still am not afforded the luxury of letting insensitive comments go, squaring it off in my mind. I live in survival and at capacity and have done for six years now. I have to manage what I expend oh so carefully. I changed my telephone number and shared it with those I knew who just got it, those who had been on the journey and adjusted with me. These people have kept me alive.

I remember waiting some more

I remember getting a call but was in a place with no signal. It was the offer of a date for surgery. I called back hours later, but the slot had been filled – this was around October 2021. I met with the consultant shortly after. He was doing what he could to get me a surgery date around February half-term 2022. This date came and went. I stopped waiting, and I got on with life, and with summer came some relief from symptoms. We went on holiday, I stole the moments and I filled my cup. I was so grateful and remember feeling how lovely it would be not to be so eternally grateful for the most basic of things. Taking things for granted is another privilege that I longed for. I look back and believe this Summer was there to give me the strength I needed to take the next step – to have the surgery. Because even though I knew it was the right choice. Life after surgery scared me to death.

I remember getting a new job and a surgery date

Before this summer, I got a new job as a Development Officer for children and young people at the local library and gallery. It was 2.5 days a week, it was fulfilling, flexible, and kind, and I was valued. I started in January 2022, and it was a 6-month contract. On Monday, the 3rd of October 2022, my contract was made permanent, and on Wednesday, the 5th of October, I went to London for Total Thyroidectomy. The relief of security for the first time in years was huge. I could focus on my operation.

I remember travelling to London for surgery

My Mum, Dad, Sister and a handful of close friends knew the surgery date. I remember being uncertain, but feeling that surgery was the only option. I couldn’t continue as I had. I felt uneasy because my symptoms had shifted and changed, because they weren’t so distinctively over or underactive (as they had been for the first couple of years) but a muddy mess of everything with a horrible hangover feeling, a restless exhaustion, and excruciatingly achy limbs (amongst other things). I was sleeping (how could I be overactive?) and of course my TSH was normal – a point of fixation for me regardless of the plethora of other clinical information I had reaffirmed to me by the consultant and his team. I was scared, not of the surgery but of everything I knew due to my previous experiences. I was scared of never being able to get my medication levels right, of living in insanity (my thyroid disease affects my state of mind) of always being tired and depressed. I was scared of it being worse than it was right now – because I could not handle that. I was scared of the unknown. But with my partner and family by my side I took the leap, I drove to London and reflected on how odd it was that tonight I would sleep in a Premier Inn with a thyroid and in a days time I would sleep in the same Premier Inn without a thyroid. I don’t think that scenario made it to the advert! The journey to London was quiet and still, I can’t remember what we ate or what we talked about but I remember that I didn’t sleep so well. I wanted to be a child again, to be playing, carefree, and held.

Click the links to read parts one, two, three, four, five, six, seven and nine of my currently 6-year-long battle.